News from NORD

NORD Updates Educational Rare Disease Reports


 

Over the past month, NORD’s Education Department staff have updated four reports in the Rare Disease Database, which is a free resource of patient-friendly, expert-reviewed reports on rare diseases. Two new rare disease reports were published this month on NGLY1 deficiency and fatal familial insomnia .

Recommended Reading

Low incidence of HS in children does not diminish importance of early diagnosis
MDedge Pediatrics
Collagen remodeling observed after laser treatment in EB patient
MDedge Pediatrics
Register Now for NORD’s Rare Impact Awards Celebration
MDedge Pediatrics
2018 Marks 35th Anniversary of NORD and the Orphan Drug Act
MDedge Pediatrics
RFPs Available for the Study of Three Rare Diseases
MDedge Pediatrics
More Than 100 Patient Organizations Join NORD in Supporting the RARE Act
MDedge Pediatrics
Medical Nutrition Equity Act Capitol Hill Day Planned for June 1
MDedge Pediatrics
NORD and Other Patient Organizations Oppose Short-Term, Limited-Duration Health Plans
MDedge Pediatrics
Running for Rare Team Participates in Boston Marathon to Raise Funds for Undiagnosed Patients
MDedge Pediatrics
NCATS Unveils Toolkit for Patient-Focused Therapy Development
MDedge Pediatrics